Getting Immunotherapy for slow growing Lymphoma. Anyone had that thera

Posted by knissy @knissy, 4 days ago

I have had slow growing Lymphoma for 2 years. Found it with a Bone Marrow biopsy. Symptoms are getting bad now. I'm considering immunotherapy. Anyone had that kind of therapy? How did it go?

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@loribmt

Good morning, @knissy. Immunotherapy for lymphoma is fairly common and beneficial. But when it’s new to you, there’s a lot of questions I’m sure! I had them too. I didn’t have lymphoma but another form of blood cancer and infusions were part of my life for quite a while.
Not sure which medication you’ll be receiving. There are different types of lymphoma with drugs to match the disease.

I’ve found a discussion that might be helpful for you!

This conversation picks up in the middle of a discussion on Staying Strong and facing an uncertain future. Most of it won’t apply to you but the link I’m posting starts with a conversation with @valandsheri when her husband was about to start Rituximab/ bendstamine infusions for lymphoma.
Here’s the link…keep reading through the next few replies.
https://connect.mayoclinic.org/comment/807392/
~~~~~
With your non-Hodgkin’s lymphoma, did your doctor discuss which type of immunotherapy they’d like you to receive?

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I went to see one of the nurses about it. She gave me a pretty large book. I didn't want to start it then. But am pretty miserable now. I need to get the book out. Thanks for your input.

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@knissy

I went to see one of the nurses about it. She gave me a pretty large book. I didn't want to start it then. But am pretty miserable now. I need to get the book out. Thanks for your input.

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If you have any questions or need clarification after reading the book, don’t hesitate pop back here! As you can see, you’re not alone in Connect. We’re here to help you get through this. ☺️

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@knissy

Isn't b that Chemo? Don't want chemo.
Glad its helping you.

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Hi @knissy, Rituximab isn’t chemotherapy, it is a type of immunotherapy called a targeted cancer treatment.
Also, please don’t let the term chemotherapy frighten you off. It can be a real life saver and there are many different forms, some with lesser intensity. But right now this is putting the cart before the horse.
It sounds like your doctor would like to start you on immunotherapy…which isn’t chemo. So that’s a really good place to start.
I’ve had Rituxan/Rituximab myself. It was a miracle drug for me. It’s very well tolerated by most people.
It is also very common for patients to have a reaction with the first treatment. It’s anticipated and handled quickly by the infusion team who will be with you during the infusion. If not in the same room with you, they will be in the immediate area. If there is a reaction they administer meds like Benadryl and steroids asap. Then they slow down the drip and all is well after that. The infusion may take a couple hours.

The infusion centers have either private rooms or lounge chairs in a group setting. But you get one on one attention from the nurses. There are usually TVs, snack/juice bars and bathrooms. You’re free to get up and walk around, use the restroom, etc., with the IV machine…it’s portable. Take along a goodie bag with a little lunch, water, and something for entertainment like a book/tablet, your phone (chargers if needed) I tossed in a small extension cord too. I think you might find this is more like a social center. ☺️

Honestly, with as poorly as you feel right now with your symptoms, I think you may feel better once you start that treatment. It would be so wonderful for you to be able to enjoy life again, right? This may be the means to get you there.

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Hi @knissy,

I am a little late to this conversation but wanted to also share my positive experience with Rutiximab to provide encouragement. I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic for an aggressive B cell lymphoma. Both of these therapies included Rutiximab.

For my treatments, Mayo administered Tylenol and Benadryl prior to each treatment to prevent adverse reactions. This worked very well to prevent symptoms and I had great results with this treatment - I have been in remission for a year now.

Wishing you all the best with your treatment and recovery.

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